Tuesday, January 31, 2012

Matthew invited us to the movies on Saturday to watch Man On The Ledge....they both loved it and i could have walked out of the movie 5 minutes into it. But it was a nice outing. Sunday we had the opportunity to go to Kiki and Lisa's baby shower in L.A and had a great time seeing all the family there.

Marco has been having more soreness in his left and right sides and a couple of days ago he was coughing up some blood sputum. It seems to have stopped for now but we are keeping an eye on that. His head soreness last night seems to be getting worse. He was complaining in his sleep of pain and held his head in the process but when I went to wake him up he said he was alright. Watching that too. He has been feeling very tired and it takes some time for him to find the strength to get out of bed.

Marco is excited for the Disturbers Super Bowl get-together this weekend. Its been over a year since they last got together.

So far on the end of the month things to do list,I have so far done most of them. Last night, Marco and I worked on the Memorial Video...we laughed, we cried, cried some more and laughed. We were up late picking songs and Marco says to me,"did you know that there aren't to many people in the world who live to participate in making decision on their own funeral planning. We usually see it on TV were the old person is leaving a message to their loved ones of what they are getting as inheritance.

In this case, we are just planning on what he would like for his funeral arrangements. Looking at all the pictures and putting it together, would of been something I would love to enjoy doing but this is somewhat bitter sweet to be making this, but it needs to get done.

I have just one more thing on the list but I tell Marco its one of those voodoo feeling kind of things to go making the real funeral arrangement, is like taboo....if you go do it, it may happen kind of feeling. But Larry the nurse would like to have everything in order before anything happens. Will see how that goes.....for now just taking it easy.

Tuesday, January 24, 2012

This nightmare and roller coaster that we seem to have gotten on and can't get offof is just torturous. Marco and I were talking last night and it’s just so hard trying to understand how the hell we got here. How did we end up here, where no one wants to be? Told after so much shit Marco had to endure at COH that there is nothing humanly possible that can be done anymore. It’s hard to accept.

His thoughts are on: when, where, and how will it happen, how much longer do I have? It’sbeen 3 months since Dr. Chow let us know that, that was it. Marco even wonders if he is selfish, selfish for wondering how much time he has. We know no one has an expiration date, believe me his not in a rush. But these are things that he thinks about often.

The emotional tension is the worse I think, we are just bombs ready to bust. Yeah, we let it out here and there, but it just seems like there is just something bigger hiding under the first couple of tears. It's hard to play the waiting game. Marco says, “you know it’s around the corner and you’re ok with that, but you don't want it to get here either.”

We are on watch 24/7. We are constantly asking Marco: How are you feeling? Are you ok? Thereare times Marco walks and begins to lose his balance, he coughs at times, he has shortness of breath and you can’t help but be cautious of everything. The pressure he has been feeling in his chest now and head is worrisome because that shit could pop up in his head again as well.

It’s hard to not to think of what could happen at any time. I ask Marco if I get on his damnnerves asking him all the time if his is okay, but he replies with no. It is really hard understanding everything Marco has gone through and for what? It just doesn't make any sense, but we do believe someone out there has voodoo dolls for us. But I believe Marco when he sings to me “LOVE, LOVE WILL KEEP US TOGETHER” (yes he does sing that to me and he holds the tune). Those are some powerful words coming from this man.

Time and time again, we don't have an explanation for it. Well, I feel I do need an explanation or more so a better understanding. I am just so pissed, that we have to go through all this. Even with all the uncertainty that life hold for us, we try to look far above the dark clouds that loom over us every day.

Saturday, January 21, 2012

It's been 5 months since Marco had his brain tumor removed. Up until now, he had been doing good. He just started to have some pressure in his head especially in the surgery area. He rubs his head to make it feel better a couple of times a day.

Its also been about 10 months since Marco had his major surgery in his left side and that soreness hasn't gone away we think it could be from the surgery itself and everything they did in there.He is also starting to feel some soreness on his right side which is were they found the new growth in June 2011. Marco still has his good days and his bad but we deal with it as it comes.He still loses his breath just doing little things, he tries to do things at a slow pace.

Marco has been trying to get a fishing trip in, but the weather and the uncertainty of what will happen makes him think twice about going out. I get scared just to think of the consequences that we would have to deal with after the trip. There is just so much movement on the boat that just on a regular day he would have a hard time. I could only imagine what that trip would be like. Yes, we want to go and go with him but just the thought of what pain he would be in, scares the hell out of me.

He mentioned the other day that he really wanted to go fishing so I said "Let's go then, I will go with you and will take the kids out of school." He didn't respond, but he looked like he almost wanted to go ...will see.

If I remember correctly, we all showed up to the Blood Bank at City of Hope. All willing and ready to give blood. The nurses just keep peeping through the little window on the door and saying Oh Shit! are they all donating. Well, okay maybe not in those words but they were all excited to have us all there donating and everyone wearing yellow to represent and the Rally Monkeys made there presents known.

Things got a little hectic after that day and I never made a mental note to come back and post all the pictures and say thank you to you all.

Most of all for driving all the way down there and being told we couldn't donate was devastating, even now as I am writing I feel sad that I couldn't donate that day ....lol, all the sad faces meant we couldn't donate because our iron was low. This day there was more sad faces and so we just cheered for the ones that could.

All the Rally Monkey's filled the waiting room it was awesome to come together to donate for Marco that day. I hope that maybe we can all get together and donate to help all those cancer patient at City of Hope and help save a life with donating blood and maybe making it a yearly thing. Maybe in February some time, let me know if its something you guys would be willing to do and we can even do it where we all go together...

Thursday, January 12, 2012

Yesterday, we had a visit from nurse Alex (a guy) very nice, while Larry was out. As he was doing his evaluation he was asking Marco about his surgeries and where he is right now.It always seems to puzzle people to hear Marco's long history with cancer.

They just all shake their heads in disbelief of everything Marco has had to deal with in thepast 4 and a half years. At the end of the the history run down they always ask....How are you dealing with all this now? Well, what do they expect him to say...okay Marco says ...it is what it is and that is pretty much it.

Then they look at me with a sad face and ask and how are you holding up?....why do they have to give me a sad face...now that puzzles me. I think, I give them that look like, what do you think? How would you feel? So I give then Marco's answer..which is"okay". We are okay, we have been dealing with it for so long and we have known what the prognosis would be and how aggressive the cancer is with no known cure as of yet. We have been put in the situation to understand and be okay with it, I guess. Sometimes, I think if we should be reacting differently to justify the sad face reaction.

As I hear Marco telling him his history with cancer, it just starts to boil my blood to play it all back. Its just ridiculous, it makes no sense even trying to comprehend all this shit. It makes me mad, after not being able to have a reaction to the brain tumor for so long, I guess it just started to build up now and I wasn't able to let it out before.

I find myself feel so overwhelmed with emotions at times, I feel mad, sad, so upset I don't know what to do with myself....but I take my ass to the bathroom and cry.

It gets pretty overwhelming at times, when Marco and I talk about "If something happens"scenarios. We need to prepared for anything, but some of the shit is just crazy.I always say I am holding everything up (or at least I try) from one corner Ihave Marco, on the other the kids, the other corner the family as a whole andthe last corner all the scared shit-less and worries we all carry and then there isme ..... holding all the structure on the inside, knees shaking trying to hold all of it together.

Marco woke up with a slight headache this morning, which has come and gone. My first reaction would have been to get on the phone and call Dr. Trisal, Dr. Chow at COH but I know we have to call hospice if it gets worse. So keeping an eye on that.

His appetite has not been as good as it has been but he eats enough to to say he had something to eat. He has been feeling very tried, but he tries his best to get out of the bed to get at least something done...like going to pick up the kids (no he is not driving, he is on strong medication) doing little things here and there and getting some paper work done for " if something should happen" kind of stuff. But all in all okay..........

Monday, January 9, 2012

Marco has been trying to do his best to scrounge some energy get out the house lately. Each day it looks like he has to ask the right side for permission and then his left side thinks about it and by that time it is noon. But all in all, he seems to be doing okay aside for not having much of an appetite lately, he says he just isn't hungry.

The new year has been quiet thus far, but I just can't help to think of the shitty year we had in 2011. To many things, the beginning of the year we lost our home that we lived in for 14 years. We were sad to let it go, but we didn't have a choice. I always said as long as we are all together it was ok it was just a house, but it proved me wrong. I had a hard time with it. But it was for the better, just glad Salt-N-Pepper and Medicated Man took us in.

Marco had his last surgeries in his lung followed by the brain tumor which caught us off guard, from one day to the next. We said our good-byes to COH, which has been so good to us. All the doctors that helped Marco through his cancer surgeries, Dr. VijayTrisal, Dr.Warren Chow, Dr. Fredrick Grannis, Dr. Yen Chen, Dr. Tan, all the nurses in the radiation dept., all the super nurses in 4-West, Lee the maintance technician and the valet guys, Estella from the positive image center, Amy and Daisy and Marisol who helped us all through the emotional roller coaster our kids were dealing with, their kind words and easy way of explaining things were helpful too, everyone was amazing. I sometimes miss that place, not for Marco to have treatment, but for all the people we had the pleasure to meet.

Then having to be told that there was nothing else that could be done for Marco at COH was heart breaking and it left us frozen to say the least. It was as if someone had punched you in the stomach. Even though it was something we knew was coming it was hard to swallow, even now.

The hard thing about it is that we don't know what lies ahead, what will happen or how will it happen and that is the scary part. We all worry when Marco is not feeling good, looks tired, we are all just keeping an eye on him all the time. I am sure it gets on Marco's last nerve, but we tell him we just love him so much we want to make sure he is okay at all times.

His equilibrium has been way off at times and his vision he says it worse at times so I told him whether he likes it or not we all have our eyes on him.

There is just so much that needs to be done for Larry (nurse) and yet I can't seem to get that stuff done. It ain't easy trying to make funeral arrangements and videos and all. This has to be one of the hardest things to do right now. I had asked Surviving 3 under 5 to please help me and go to the cemetery and get information for us.She said she had a hard ass time getting her shit together, I could only imagine me going there. TERRIBLE but she cowgirl'd up and did a great job in getting exactly what we asked of her.

So here I think I am in the clear....so for a couple of months now I was under the understanding that when shit hit the fan we would call these people and we were ready to go...noooooo. I fix the cemetery information card on the hospice folder for Larry and I let him know the other day that this is the card with information to call and it would be good to go. So he asked so it everything done chosen and paid for...I told him.."no.." lol. He says ok, you need to get it all done so all I have to do is call and everything is taken care of and I don't have to ask you a million question cause you will not have a clue or the mentality to answer any question if anything should happen.

Let me tell you, its not something I or we want to do or care to do but we know it needs to get done so that is my goal this month to get that shit done. Marco has given his input of what he wants and how he would like it, and its just so weird to us to be talking about it while he is still alive.

I do recommend that you all let your loved ones know what you want and don't want for your funeral arrangements and have it all done before you are forced to do it. Same thing with your living wills and estate shit....get it done and you avoid all the emotional roller coaster trying to get it done while your still alive.

Tell the people in your life how you feel and say I love you to your mother, brothers and sister, wife and husbands and kids and enjoy every day, sometimes time is not on your side and the days go by so fast you wish you had the power to slow it down to slow motion but in reality that can't be done so enjoy one day at a time.

"Good night, just want to tell you, I LOVE YOU GUYS, just in case I don't wake up in the morning." -Marco "I love you too dad" -DLP"I love you more" -Me"But I love him most" -Matthew

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What is Soft-Tissue Sarcoma?

Soft tissue sarcomas are cancerous tumors that originate in the soft tissues of the body.

These tissues include muscle, fat, blood vessels, nerves, tendons and the lining of the joints. Marco's sarcoma started off as a tumor in his calf muscle in December 2007. The tumor was surgically removed, then treated with radiation.

The cancer later spread to his lung area, the tumors were also surgically removed, his body treated with chemo. He had three more tumors in his lungs, which they tried to shrink down with chemo.

Doctors had ruled out any more surgeries after chemo but they finally agreed.

On March 15, 2010 they removed the three tumors from his lungs, a section of the lung and diaphragm and three sections of ribs. Marco was in intensive care for over a week fighting an infection.

A CT scan showed worrisome signs that the cancer was back and it was confirmed with a PET scan.

Marco went through the maximum number of chemos to try to shrink that tumor. The tumor was not being responsive to the chemo in the shoulder area and there was a new tumor discovered near the aorta that was showing some response.

On Jan 15, 2011 Marco started 6 weeks of radiation aimed at his chest area, 5 days a week 30 min a day before surgery options were put on the table again.

After much debate, surgery was completed March 28, 2011. Marco underwent a painful recovery at home, only to discover over the Labor Day weekend that the sarcoma has spread to his brain.

Marco had brain surgery September 2011 to have the brain tumor removed. He also completed radiation to the operated area. On October 2011, Marco exhausted all of his treatment options at City of Hope. Marco entered home hospice care.

On March 3, 2012, Marco passed away at home surrounded by his family. You can read the posts and archive to read his story.